The federal government will spend up to $1.5 billion over the next three years to improve access to drugs used to treat rare diseases, Health Minister Jean-Yves Duclos said Wednesday.
Almost all the funding envelope B次元官网网址� $1.4 billion B次元官网网址� will go to the provinces and territories, Duclos said, which will share the costs of the drugs with Ottawa. Another $33 million will go to Indigenous Services Canada to support eligible First Nations and Inuit patients with rare diseases, he added.
Duclos said he wants to increase coverage for existing drugs and create a list of new and emerging treatments that would be subsidized relatively equally across the country, removing the need for people to move outside their home province for care.
B次元官网网址淭he national strategy will increase and harmonize coverage for existing drugs; it will add coverage with emerging and new drugs; it will speed up the ability to do important diagnostics, especially for children,B次元官网网址� he told reporters in Montreal.
While there are no treatments for the majority of rare diseases, those that do exist are often expensive B次元官网网址� ranging from $100,000 and $2 million per year B次元官网网址� and coverage can vary from province to province, Duclos said.
B次元官网网址淐anadians must have better access to affordable prescription drugs; for some, paying for much-needed medication represents an impossible choice between managing their health-care situation and paying everyday bills,B次元官网网址� Duclos said, adding that heB次元官网网址檚 heard B次元官网网址渉eartbreaking storiesB次元官网网址� of families who have considered moving to a different part of the country to be treated.
Duclos said 9,600 people could benefit from the new funding, including 4,500 children. Around one in 12 people has a rare disease, Health Canada said.
Treatments for rare diseases account for around 10 per cent of the total cost of drugs in Canada, Duclos said. B次元官网网址淭he cost of drugs for rare diseases also increases very quickly. Over the last 10 years, it has increased by an average of 32 per cent. So we see where weB次元官网网址檙e heading,B次元官网网址� he said.
Gail Ouellette, the president and scientific director of a Quebec group representing people with rare diseases B次元官网网址� Regroupement qu茅b茅cois des maladies orphelines B次元官网网址� said the announcement will give people hope that they can access treatments regardless of where they live in Canada.
Ouellette told the news conference that people with rare diseases face many obstacles in the health-care system, including the length of time it takes to get diagnosed and the high costs of treatment.
B次元官网网址淏ut one of the worst things for these people is to know that a medicine exists for their condition, but to not have access B次元官网网址� to know that it is authorized by Health Canada and that people like them have access elsewhere in the world or in other provinces, but not them,B次元官网网址� she said.
Among the founders of OuelletteB次元官网网址檚 group were individuals with ataxia, a disease that leads to loss of muscle control; Morquio syndrome, a genetic condition that affects the growth of a childB次元官网网址檚 bones and organs; and Fabry disease, a genetic condition that can lead to heart and kidney problems.
Durhane Wong-Rieger, CEO of the Canadian Organization for Rare Disorders, told the news conference that the announcement recognizes the importance of early access to effective, promising medicines for patients B次元官网网址渂ut also the need for early diagnosis and treatments, preferably before patients are seriously compromised.B次元官网网址�
The new funding includes $20 million over three years to gather evidence on the safety and effectiveness of drugs, while another $32 million will be used over five years to fund research on rare diseases and to establish a clinical trials network.
Wong-Rieger said sheB次元官网网址檚 pleased to see the funding for research because only around five per cent of rare diseases have an effective treatment.
B次元官网网址擩acob Serebrin, The Canadian Press
